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Headache, Nausea, Belching, Dreaming About Being Sick...


JenKuz

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JenKuz Explorer

I just seem to go from bad to worse. I have had a pounding headache three days in a row now. I was dizzy and nauseated all day yesterday. I woke up at three from a terrible dream; I was on a roller coaster and was getting dizzy and sick to my stomach, and I wanted them to stop but they wouldn't. Needless to say, I woke up feeling dizzy and nauseated. Spent the next two hours with awful D. I wanted to V but didn't. Headache all through it.

This morning I felt really dizzy, I was trying to read but I couldn't focus and the lack of focus was making me nauseous. Headache still on. So I got kind of scared, and was already feeling overwrought from no sleep and constant pain. I called my regular doc at student health to see what she thought.

She said:

"I'd be happy to give you a referral to a psychiatrist."

I just burst into tears, the minute I hung up the phone. She thinks I'm crazy. I mean, I've heard of psychogenic pain, but psychogenic D? Wake-you-up-in-the-middle-of-the-night D? Psychogenic? Seriously.

Okay, to be fair, she said, "I don't think it's all in your head, or anything, but maybe a psychiatrist could help you, you know, deal with it." (Read: "Stop calling me when you're sick.")

Then she tells me some lengthy story about a girl who had headaches for a month and they couldn't figure out what was wrong, but the psychiatrist was able to help her....

Bah. I was like, "Well, this is several symptoms all at once, and they've been going on for a year and a half, and they are not getting better, they are, in fact, getting worse. I do *not* need a psychiatrist. What I need is a diagnosis. A correct one.

Well, my GI doc called in a prescription for an anti-nausea med that he said would help me sleep, too. He also said it might make it hard for me to work. Great. How and when am I supposed to study for this qualifying exam? I just...... *sigh*

My bowels have taken command of my life.

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Yenni Enthusiast

My bowel has taken command over my life too. :(

I so feel for you. I am kinda in the same situation as you. Not feeling quite as dissy as you though, but I dream of food and naseau at night. Then wake up feeling awful.

I feel like I am going insane. I am so tired of this.

So you are not alone, not that that is much of a comfort.

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JenKuz Explorer
My bowel has taken command over my life too. :(

I so feel for you. I am kinda in the same situation as you. Not feeling quite as dissy as you though, but I dream of food and naseau at night. Then wake up feeling awful.

I feel like I am going insane. I am so tired of this.

So you are not alone, not that that is much of a comfort.

It's comforting that there are other people out there who don't think I'm crazy. :)

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oceangirl Collaborator
It's comforting that there are other people out there who don't think I'm crazy. :)

Whenever I am in a bad gluten way I routinely awaken from disturbing dreams of pain and cramping interposed with weird psychic visions of an extremely disturbing sort. I am NOT crazy or in need of a shrink (although I've readily seen a few in my life when my human condition became too overwhelming to go it alone...) I am SICK, physically sick when this happens!!! I believe YOU are not insane either! It was AWFUL before I eliminated gluten and it still happens sometimes now. My heart goes out to you. See someone else, keep advocating for yourself and DON'T let them spin that "it's all in your head" cop-out on you. I just ferreted out a gluten source I've ROUTINELY been giving myself in my HOMEADE RICE MILK via the vanilla beans I was using! Found out they're cured in bourbon! I suspect not gluten-free bourbon. Maybe there are still as yet undiscovered sources of gluten for you as well? Keep digging and feel better soon!

lisa

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JenKuz Explorer
Whenever I am in a bad gluten way I routinely awaken from disturbing dreams of pain and cramping interposed with weird psychic visions of an extremely disturbing sort. I am NOT crazy or in need of a shrink (although I've readily seen a few in my life when my human condition became too overwhelming to go it alone...) I am SICK, physically sick when this happens!!! I believe YOU are not insane either! It was AWFUL before I eliminated gluten and it still happens sometimes now. My heart goes out to you. See someone else, keep advocating for yourself and DON'T let them spin that "it's all in your head" cop-out on you. I just ferreted out a gluten source I've ROUTINELY been giving myself in my HOMEADE RICE MILK via the vanilla beans I was using! Found out they're cured in bourbon! I suspect not gluten-free bourbon. Maybe there are still as yet undiscovered sources of gluten for you as well? Keep digging and feel better soon!

lisa

I'm so glad you responded. I have had terrible, terrible nightmares for years. Until just now, I didn't put it together with feeling sick. Even the ones that I started having shortly after the GI symptoms started. They got worse around the same time, but I never made the connection. I thought it was totally separate. EVEN THOUGH I can remember saying, numerous times, "These nightmares are so awful, so terribly awful, they even make me sick to my stomach!" Because I always felt so sick in the morning when I would wake up from them.......... Lightbulb moment.

As for the shrink, it would have been different if she'd recommended a psychologist or other counselor to help me cope...but a psychiatrist? That spells, "You've got some somatization problems, honey, but with some of these nice pills, we'll sort you right out..."

I've never had any kind of mental illness, unless you count what I've developed from having to deal with this crap. I'm stressed out, and I'm depressed and feeling guilty because I can't work like I want to. A counselor can help me with these things, I'm sure, but a psychiatrist can't.

(Also, how do you make rice milk at home?)

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Budew Rookie

I'm so glad you wrote in. I've been reading the board wondering if anyone else was feeling as sick as I am. I hope not being alone helps you as much as is does me.

I've been like this for 5 years. Everything you mentioned except my dreams are about the deaths of my dad, grama, and pets.

It is hard to believe that I spent the first 2 years, naked wrapped in a blanket, V. D. headaches. Eating only white potato margerine and salt, drinking water. Finally I realized it was the salt, rather the iodine in the salt. 3 days off iodine and the vomiting nearly stopped. My thyroid meds were also able to work for the first time in 25 years.

I thought I was going to be okay. Now I am as well as you it sounds like. I am looking at the chemicals within foods that have nothing to do with gluten. Nightshades, salicylates, lactose right now. It's so hard to avoid them all that it takes me a little time to adjust. Since no one can say for sure, and it is so hard to isolate exactly which foods are the culprit, I try a piece of cheese, potato, or eat a tomato once in a while to see if I REALLY have to avoid them. Some foods I can tolerate to a degree.

About being crazy. I have been to shrink after shrink. None have helped much. Those who did listened showed compassion and admitted they did not know what to do except give me drugs to supress the symptoms. I've been on most anti depressants, zyprexa (horrible side effects for everyone I know). No doubt I was depressed, but 20 years of misdiagnosis, and malnutrition will do that. I was labeled psychotic, bi-polar, and anorexic. One time a psych treated to have me admitted to a psych hospital if I refused to take the drugs, or if I did not gain weight. They were convinced I was not taking the thyroid medicine and was self-destructive. None of this is true. In fact I was 20 years undiagnosed celiac suffering severe malnutrition.

Instead of looking for the problem they just decided I was the problem and treated me at least as poorly as your doctor. My husband comes to all of my medical appoinments now. It ticks me off to see the difference in how they treat me when he comes along.

A real pitfall with the shrink route is if they label you, which they will so your insurance will pay, you will automatically be denied disability insurance. So get it before you go.

I let these folks get in my head and began to wonder if they were right. Once I started to solve the problems they couldn't I know they were all wrong. DON"T LET THEM GET TO YOU! Trust yourself, talk to us.

You are in my heart. Good luck and hang in there!

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Terch Apprentice

Hi,

I am sorry that you are feeling this badly. I believe it was FDR that said "when you get to the end of your rope you need to tie a knot in it and hang on."

I am sure you are tired and frustrated and it helps to vent and to know that others feel what you feel and that all you want is for someone to validate the fact that you don't feel well and that you are not crazy.

I also think that seeing a psychiatrist is not a bad idea since that is a real medical doctor that could perhaps help you in finding some REAL help for your physical symptoms as well as help on how to cope with not feeling well. Just a thought!

Goo luck. T

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jknnej Collaborator

So sorry you are feeling this poorly.

I haven' t been on the board for awhile but I've been gluten free for two years and on this board that long as well. So pardon my questions; this is the first post of yours I have read.

Are you gluten free? What is your typical daily diet like?

Do you suffer from acid reflux? I also awake at night dreaming of being sick and Nexium helps with that. But I still have to stay away from sugar and alcohol, and not eat at least 3 hours before bedtime.

Do you suffer from migraines? I also get migraines, and they make me nauseated and have a very upset stomach. They also make me dizzy, light sensitive, and noise sensitive. My entire body aches when I have a migraine. Relpax helps a great deal with this.

If your doctor gives you Phenegran, or a generic of Phenegran, for nausea, it will help but make you very sleepy as it is an antihistamine. It does work.

If you must be awake for work or school, ask for Zofran. It works just as well without the drowziness.

Or, ask for both: the Phengran will help you sleep at the appropriate time and the Zofran will help your nausea without tiredness.

If you can't keep anything down, Phengran also comes in a suppository. It also works a LOT faster that way when you are vomiting.

Hmmm...other than meds, I would suggest eating a VERY bland diet until you feel better; free from all allergens: soy, peanut, corn, potato, gluten, dairy (casein). Try lots of rice and eat plain chicken if you can tolerate it.

Don't get offended by your doctor; sometimes when a doctor can't find a solution they pin it on anxiety. A lot of times they are correct, but not if your symptoms are that severe and there is no cause for anxiety. They are probably more embarrassed that they can't figure out what is wrong with you.

Hope you feel better,

Jenn

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NoGluGirl Contributor
I'm so glad you responded. I have had terrible, terrible nightmares for years. Until just now, I didn't put it together with feeling sick. Even the ones that I started having shortly after the GI symptoms started. They got worse around the same time, but I never made the connection. I thought it was totally separate. EVEN THOUGH I can remember saying, numerous times, "These nightmares are so awful, so terribly awful, they even make me sick to my stomach!" Because I always felt so sick in the morning when I would wake up from them.......... Lightbulb moment.

As for the shrink, it would have been different if she'd recommended a psychologist or other counselor to help me cope...but a psychiatrist? That spells, "You've got some somatization problems, honey, but with some of these nice pills, we'll sort you right out..."

I've never had any kind of mental illness, unless you count what I've developed from having to deal with this crap. I'm stressed out, and I'm depressed and feeling guilty because I can't work like I want to. A counselor can help me with these things, I'm sure, but a psychiatrist can't.

(Also, how do you make rice milk at home?)

Dear JenKuz,

I thought I was the only one that had that! I have done much better since going gluten-free. If you want to be safe, just stick with meat, fresh fruit, veggies, for a while. That really helped me. It is quite bland, but it does help. Also, you may want to see if you have a problem with an overgrowth of yeast. It is like gluten intolerance and Celiac, where it effects so many things. My doctor recently said she suspects it along with food sensitivies and allergies as well as vitamin deficiencies and endocrine problems. Many doctors I had seen in the past doped me up on every drug you could name. I am not neurotic, I am sick. It took me years to find that out. Finally, things are making sense. Hang in there! Again, I would like to stress going gluten free and the yeast candida issue are very helpful. I have been through a lot of misery. Hopefully, we will all feel better soon!

Sincerely,

NoGluGirl B)

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oceangirl Collaborator
Dear JenKuz,

I thought I was the only one that had that! I have done much better since going gluten-free. If you want to be safe, just stick with meat, fresh fruit, veggies, for a while. That really helped me. It is quite bland, but it does help. Also, you may want to see if you have a problem with an overgrowth of yeast. It is like gluten intolerance and Celiac, where it effects so many things. My doctor recently said she suspects it along with food sensitivies and allergies as well as vitamin deficiencies and endocrine problems. Many doctors I had seen in the past doped me up on every drug you could name. I am not neurotic, I am sick. It took me years to find that out. Finally, things are making sense. Hang in there! Again, I would like to stress going gluten free and the yeast candida issue are very helpful. I have been through a lot of misery. Hopefully, we will all feel better soon!

Sincerely,

NoGluGirl B)

JenKuz,

Hi! Here's what I do (sans vanilla for the time being):

Rice Milk

Cook Sushi rice to yield one cup cooked.

Bring to almost boil 4 cups water

Blend with Sucanat (natural cane sugar) or any sugar to taste- usually about 4 Tbls

(I do all this in parts so I don't clog or overfill blender) After well-blended, I strain rice milk into container and store for the week! It's pretty good and at least I know what's in it, although the vanilla adds a nice flavor so I need to find a gluten-free one now!

lisa

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Budew Rookie

Terch the FDR quote became my immediate mantra.

"when you get to the end of your rope you need to tie a knot in it and hang on."

JenKuz you said

I'm stressed out, and I'm depressed and feeling guilty because I can't work like I want to.

Not being able to work like I want to is big. I have a passion to teach and I feel a responsibility to make positive changes in the educational system in a profound way. I was on the road before I got sideswiped. I contunue to try to satisfy the desire I have to engage in my passions but I have realized that I must find a path that accomodates my situation and my passion without beating anyone up about the circumstance.

When given lemons, make lemonade.

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Natlay Apprentice

I've been having the same kinds of problems lately. I've gotten to the point where everything make me feel sick and I don't even want to eat anymore. Some nights I don't get to sleep at all and then I have horrible dreams when I finally do sleep. I just started a new job and I can't seem to get motivated for it because my whole body feels so terrible all the time. It sucks that so many of us still feel so bad. I'm starting a new club...it's called "I hate food" :P

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JenKuz Explorer

Thank so much for all your support and advice, everybody!

Jenn, I'll do my best to answer your questions below:

Are you gluten free?

Only recently, and still getting the hang of it. I've been gluten light about a month, and gluten "free" (if you don't count things I've missed) for two weeks or so.

What is your typical daily diet like?

Basically vegetarian. No dairy except yogurt and a little butter. No meat (sometimes eggs, fish once in a great while). Lots of vegetables and fruits. A good bit of rice. Some nuts. Though I tested IgE positive to hazelnut allergy, so I'm going to cut out all tree nuts until I get better. I've tried replacing the milk I usually drink in tea and coffee with soy or a soy/almond blend. But I don't really like them, so I'm switching to rice and coconut milk. I am switching from coffee to tea; I still drink coffee about once a week.

Do you suffer from acid reflux?

It could kill a horse. It's awful. I tried pepcid, and it didn't seem to help much. But that was way back when it wasn't quite as bad, and I didn't feel compelled to stick with it. Now the heartburn is awful, but I have mixed feelings about acid reducers. I sort of put them in the same category with immodium; short term relief at the expense of long-term damage. When it's truly disruptive, I take rolaids multi-symptom.

Do you suffer from migraines?

I've never had them, though my mom suffers from them and her started in her twenties.

If your doctor gives you Phenegran, or a generic of Phenegran, for nausea, it will help but make you very sleepy as it is an antihistamine. It does work.

This is the one he gave me, and I woke up very, very groggy. But no bad dreams, I slept like a baby, and the nausea didn't come back until just recently (after lunch, naturally).

If you must be awake for work or school, ask for Zofran.

Good to know. I'll get an Rx for this soon as I can.

If you can't keep anything down, Phengran also comes in a suppository. It also works a LOT faster that way when you are vomiting.

I don't vomit too much, just feel like I really really want to, but then can't, and D inevitably follows soon after.

Hmmm...other than meds, I would suggest eating a VERY bland diet until you feel better; free from all allergens: soy, peanut, corn, potato, gluten, dairy (casein). Try lots of rice and eat plain chicken if you can tolerate it.

Yeah, that's the next step. Cutting all the other stuff out.

Don't get offended by your doctor; sometimes when a doctor can't find a solution they pin it on anxiety. A lot of times they are correct, but not if your symptoms are that severe and there is no cause for anxiety. They are probably more embarrassed that they can't figure out what is wrong with you.

You're right.

Hope you feel better,

Jenn

It's so hard to explain to people that stress is *not* what's making me sick. Being sick is making me stressed! My doctor was trying to pin it on my qual exam. I was like, well, I took one in June and wasn't this sick then. I wasn't this sick when I was defending my proposal to department and writing grant apps. I was just as stressed out then, but not this sick.

Lisa,

Thanks so much for the recipe! I'm going to try it. I'd also like to try making coconut milk at home.

You know, I was wondering if I'd been glutened a couple of days ago, and I kept thinking about the hot chocolate I'd made (from scratch), since I started feeling sick after drinking it. I had added vanilla extract. And wouldn't you know, but that my vanilla has bourbon, too? I'm so glad you mentioned it, I would never have thought of it.

Noglugirl,

Thanks for the tip on yeast. My mom has always had good luck on the diets that are meant to limit candida overgrowth. I'm pretty good at taking my probiotics, but I would like to start limiting sugars and starches, to help, since my malabsorption is SOOO high.

Budew,

I'm so sorry! It sounds like you've been worse off than me. I agree with the psych stuff; as soon as you go, even if it's just for support and advice, suddenly it becomes a bucket for every physical symptoms...it's all "somatization."......As much as I'd like to take Terch's advice, I'm afraid to for insurance reasons, too.... What a system we have here, huh?

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jknnej Collaborator

If you have bad reflux, this could be your problem! If you are only taking over the counter meds there's no way that will cut it if you really have reflux.

Last year I was taking Prilosic OTC for reflux and I was SO nauseated all of the time I couldn't eat.

I went to the GI dr and he said that nausea is a side effect of both reflux AND Prilosic OTC. He put me on Nexium instead and my nausea cleared up...so much so that I immediately gained weight.

If you truly have bad reflux, you need to take a prescription med because it can permanently damage your esophagus and even turn into cancer.

If you haven't, see a GI doc and try some samples of Nexium. This may be your main problem!

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JenKuz Explorer
If you have bad reflux, this could be your problem! If you are only taking over the counter meds there's no way that will cut it if you really have reflux.

Last year I was taking Prilosic OTC for reflux and I was SO nauseated all of the time I couldn't eat.

I went to the GI dr and he said that nausea is a side effect of both reflux AND Prilosic OTC. He put me on Nexium instead and my nausea cleared up...so much so that I immediately gained weight.

If you truly have bad reflux, you need to take a prescription med because it can permanently damage your esophagus and even turn into cancer.

If you haven't, see a GI doc and try some samples of Nexium. This may be your main problem!

I definitely do have bad reflux...it's basically 24/7 now.

The thing is, the nausea started much sooner. The reflux has only gotten bad over the last couple of months, where the nausea and loose stools have been around for a year and a half. So I'm tending to think that the reflux is another symptom of whatever else is going on. I'll definitely consider the nexium, because it would be great to get rid of these symptoms! but I still want to search for a diagnosis for the total problem, and a way of eating that helps manage all the symptoms at once...

My GI doc barely lets me get a word in edgewise. He doesn't seem to care about the symptoms at all. He didn't prescribe me anything for any of them until I called in because I was so uncomfortable... On that phone call, I got an Rx for the nausea, but didn't have time to bring up the heartburn. He made me feel kind of bad because I was trying to tell him my Enterolab results... and he was like, "Well, what does it mean?" Which confused the heck out of me, because it's a malabsorption test...pretty standard in the business, I think. So I stumbled for a second, I didn't know what he was asking, and then he went on in a huff..."that's the problem with these places, you know, they give these tests, but you don't even know what it is, and they don't tell you what it means. *They* aren't going to be your doctors...." Well apparently this guy isn't interested in actually being a doctor for me, either, because he wouldn't listen to a word I had to say. Just kept interrupting, and b%$@#ing, then rushed me off the phone with a Rx for the promethazine.

The frustrating thing is, I study medical anthropology! Our whole profession is built on watching doctors, and thinking critically about what they do and how they act. I've read all the literature on doctor-patient interactions, how male doctors treat female patients, etc. I know all about it. But having that knowledge doesn't bolster me up or give me extra confidence in my interactions; I still feel like a five-year-old. And like I, of all people, should have been able to make myself heard and failed.

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aikiducky Apprentice
You know, I was wondering if I'd been glutened a couple of days ago, and I kept thinking about the hot chocolate I'd made (from scratch), since I started feeling sick after drinking it. I had added vanilla extract. And wouldn't you know, but that my vanilla has bourbon, too? I'm so glad you mentioned it, I would never have thought of it.

Could it be that's why your symptoms got worse again all of a sudden? After being gluten free for a little while, you start to react more strongly to glutenings, even small ones.

I got glutened two days ago, and I'm having horrible reflux, too. :( But I know, since I've been gluten free for two years now, that it's not an on going problem and it'll clear up again in a few days.... doesn't make it fun right now, though.

The only thing that is driving me slightly nuts right now is that I don't know what it was! If it was cc, it was cc at home, and if it wasn't, one of my safe foods isn't safe anymore, and I'm still glutening myself. Aargh....

Oh, one more thought... if you want to stand up for yourself with people who talk over you, be prepared to feel "rude", since basically you'll have to ignore what they are saying and talk over them. It's very hard to stand up for yourself and feel like your being polite, if your definition of polite is in fact too gentle for this kind of people (like mine is... voice of experience here :P ).

Pauliina

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mandyann Newbie

Hi-

I don't post very often here but I just wanted to tell you my thoughts. I have struggled with headaches for most of my life, starting in my teens. I am 41 now and have realized a lot in just the last few years. The throbbing headaches can be migraines, especially when they last for a few days. My worst last anywhere from 2-3 days. I went for years just thinking that I had a headache or tension headache (from the muscle spasms that accompany them), it wasn't until the last few years that I realized that they were migraines. I've never been able to get any relief from Advil or the other over the counter pain relievers. But for a preventative, I just started Amitriptyline about two months ago. The smallest dose available is 10 mg and in the past it was too sedating for me but I have found that I can take as little as a half a pill a night and it works for me. I went as long as 7 weeks without a headache. I also saw a post here about someone (I think it was here at least) being prescribed it to help with spasms in their gut.

The other thing that I wanted to tell you is that when I gave up gluten in the spring I didn't feel better until after I also gave up the dairy. I just love my coffee or tea with half and half and it was the hardest thing for me to give up.

Oh and also, my doctor of five years told me in the spring that she wanted me to see a psychiatrist too. I never did it but found a new doctor that diagnosed the Celiac's. I hope this helps.

Take care-

Diana

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Budew Rookie

Thank you for being so specific with the Amitriptyline.

I can't take over the counter. Hydocodone has no effect. So at least I have some direction. Thanks!

I am very skeptical about taking persciptions, becuase I am often asked to take drugs that mask problems.

That's why it took 30 years to be diagnosised celiac disease.

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mandyann Newbie

For me to go 7 weeks without a migraine is huge! I was surprised that it would be so effective in a small dose and my doctor told me that I will not build a tolerance to it. I was very leary of the other preventatives and other than the sedation at night, I don't have any other side effects.

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NoGluGirl Contributor
I definitely do have bad reflux...it's basically 24/7 now.

The thing is, the nausea started much sooner. The reflux has only gotten bad over the last couple of months, where the nausea and loose stools have been around for a year and a half. So I'm tending to think that the reflux is another symptom of whatever else is going on. I'll definitely consider the nexium, because it would be great to get rid of these symptoms! but I still want to search for a diagnosis for the total problem, and a way of eating that helps manage all the symptoms at once...

My GI doc barely lets me get a word in edgewise. He doesn't seem to care about the symptoms at all. He didn't prescribe me anything for any of them until I called in because I was so uncomfortable... On that phone call, I got an Rx for the nausea, but didn't have time to bring up the heartburn. He made me feel kind of bad because I was trying to tell him my Enterolab results... and he was like, "Well, what does it mean?" Which confused the heck out of me, because it's a malabsorption test...pretty standard in the business, I think. So I stumbled for a second, I didn't know what he was asking, and then he went on in a huff..."that's the problem with these places, you know, they give these tests, but you don't even know what it is, and they don't tell you what it means. *They* aren't going to be your doctors...." Well apparently this guy isn't interested in actually being a doctor for me, either, because he wouldn't listen to a word I had to say. Just kept interrupting, and b%$@#ing, then rushed me off the phone with a Rx for the promethazine.

The frustrating thing is, I study medical anthropology! Our whole profession is built on watching doctors, and thinking critically about what they do and how they act. I've read all the literature on doctor-patient interactions, how male doctors treat female patients, etc. I know all about it. But having that knowledge doesn't bolster me up or give me extra confidence in my interactions; I still feel like a five-year-old. And like I, of all people, should have been able to make myself heard and failed.

Dear JenKuz,

Man, I know how you feel. The promethazine is the only thing that helped me with the nausea, but it makes me so sleepy! You cannot take it and go to work. Doctors usually have a God complex. Don't let some idiot in a lab coat tell you what to do with your body. They do not have any idea what you feel like. When I was 18 years old, I was terrified when I was put in the hospital for four and a half days with testing done. I had trouble taking the golitely solution for the colonoscopy, and the nurse actually threatened to take a tube down my throat and pour it into my stomach! I could not believe that my parents would allow them to do that! Well, it turns out, the nurses and doctors lied to my parents about what was going on. I did not find out until quite sometime later (a few years) that my parents had no knowledge of this. All of the horrible things that happened to me I will never forget, and do not know if I will ever be able to recover from emotionally. Even now, at 23, I am upset by these thoughts. Just as bad, a whole team of doctors just told me I was nuts after a colonoscopy, endoscopy, entercolisis, gastric emptying study, and blood work.

Now I am still stuck on an anti-depressant that I wonder if I will ever get off of it. Do not ever go on one of those things! You know the guy that was head of this team actually was head of Gastroenterology and Hepatology and missed my gallbladder?! I finally got it removed a few years ago. The PCP I had at the time missed a gallstone I had when all the trouble got so bad. She was so stupid. Then, I switched doctors after all of that horror, and this doctor said the tests showed nothing so I was fine. After heaving half to death for a while, I decided to drive him crazy until he allowed me to see a surgeon. The surgeon was thorough, and said operating was an option. So, I listened to my intuition, which is never wrong. At the ten day check up, I found out that my gallbladder was removed in the nick of time. It was extremely inflamed and irritated, and ready to rupture. Always trust your instincts. Do not listen to anyone else. It will not steer you wrong! That is how I learned about Candida. I decided to switch to a holistic physician who is also a regular M.D. She discovered the gluten intolerance. I am so glad I decided to see her. I wrote an essay on Candida since I did so much research ( I can honestly say I have no idea how many I read) and would be more than happy to send you a copy. Just ask!

Sincerely,

NoGluGirl

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Rachel--24 Collaborator
It's comforting that there are other people out there who don't think I'm crazy. :)

JenKuz,

I dont think you're crazy....your posts sound exactly like what I went through with the Dr.'s for 3 long and very stressful years. Every last one of them saying I needed to see the shrink. I remember seeing the OBGYN and him telling me that Prozac would solve all my problems. I had refused all antidepressants and most meds up to that point....trusting my own instincts.

I told the guy that there is NO way depression was causing all of these very real and painful symptoms ALL over my body everyday for years. Also....I had a very happy life up until I got sick...nothing to be depressed about...except the fact that these Dr.'s werent LISTENING, my health had taken a nosedive and for the first time ever I wasnt able to work!

He told me 2 months on Prozac would fix everything...I finally gave in and lo and behold two months went by and NOTHING changed. Then it was "Oh...you need a higher dose" or "You need this drug on top of the Prozac." That was it for me....never took another antidepressant or any type of drug after that. I knew something was making me sick and it wasnt in my mind.

I finally went to the shrink since no Dr. was gonna do anything for me except tell me I needed to go....I think it was written in my file or something. When I finally relented....the very nice psychiatrist listened to me and then stated that she could NOT help me. Apparantly she was the only one smart enough to see that there was something physically wrong. She said she could give me something to help cope but in no way could she make me better....the DR.'s would have to find out the cause of my illness. I refused the drugs....knowing they wouldnt help me. I had lost 25 lbs. by that time.

It baffles my mind that Dr.'s can even consider that this many physical ailments all occurring at once can all be caused by depression or something in our mind....especially when there has been no prior incidence of trauma or mental health issues. Its maddening....those doctors caused me way more stress and depression than what I was already experiencing from the illness alone.

So now after 4 years I've found decent Dr.'s....they recognized my symptoms, ordered the right tests and diagnosed me correctly. I have Lyme Disease and along with that I have some bad candida, leaky gut and just a bunch of issues that probably ultimately started from the Lyme disease weakening my immune system.

Its been a rough road for me but I gotta say.....I wasted ALOT of time on these Dr.s who insulted my intelligence....not believing I could know my own body and that something was VERY wrong with it. If these Dr.'s arent believing you....find better ones. Dont give up until you find the RIGHT one...they're out there. I was starting to doubt it myself but now I know....there are some very good doctors out there. Too many times I left my Dr.'s office in tears....just not even wanting to live anymore.....wondering why they wouldnt help me. It shouldnt be that way and it doesnt have to be that way...it just took me a long time to figure it out.

I hope things get better for you. Trust your instincts and dont let anyone blow you off......you know yourself better than any of those Dr.'s could ever possibly know you. Something is wrong and they need to figure out what it is. What worked for me was doing research....getting my own "ideas" of what I *thought* might be wrong and then finding Dr.'s who were knowledgeable in those areas to run tests and rule these things in or out. Lyme was actually something I suspected over 3 years ago but the Dr.'s wouldnt test me and I didnt bother seeking out a Dr. who would....so my diagnosis was very delayed.

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JenKuz Explorer

Noglugirl-

That's such a painful story to hear. I have some questions about your gallbladder problems, though. I have attacks of pains under my right ribcage; it feels like somebody is stabbing me in the ribs. They'll last for about 20 minutes, and then subside to a dull ache. The only way to cope is to curl up into a ball on the floor and not move and barely breathe until it passes. I had an especially bad one the other day and wound up in the ER at Cedars Sinai. I was visiting LA and had to be on a plane all day the next day--I was terrified of getting on a plane and then finding out I had appendicitis or something.

In the ER, I gave them my full history, but all they did for me was to run the same exact tests I'd already told them I'd had done. Just blood work, that's all they did. Then said, "Well, your white count is fine, so you're in no danger; just maybe don't eat anything tomorrow while you travel?"

$1000 I paid for that stellar advice. There ought to be a satisfaction guarantee for things like that.

Anyhow, I just had another attack under my ribs tonight, for a half an hour. But as far as I know, none of my doctors have tested anything to do with the gallbladder. I mentioned it to one of the Drs once, because my dad had an emergency gallbladder removal a few years ago, and the pains I'm having sound just like his. Also, I believe it's something that runs in families. She gave me a referral for an ultrasound, but at the time I still thought it was something infectious b/c I'd just gotten back from three months in rural Africa. When I finally wanted to use it, I found out my referrals didn't extend from one school year to another, and my new doc...well, she's the one who told me to go to the psychiatrist.

So my question, I guess, is what sorts of tests should I request for gallbladder? A CT? I've been curious as to why they've requested no CTs for me before; I think my GI doc is enthralled with scoping. That's all he keeps saying, is wait for the scope...never mind he made me wait two months just for scheduling the darn thing!

That said, I'm really glad that you have finally found the road to healing, and have found someone who can help you that (she doesn't happen to practice in Atlanta, does she? Wishful thinking...)

If it does turn out to be my gallbladder, the upshot of all this waiting is that I've discovered a gluten intolerance through enterlab, so it may be a blessing in disguise. Perhaps I wouldn't have caught it until much later, if I'd chalked all my symptoms up to gallbladder.

Rachel--

Thanks so much for your words of support! I can hardly believe what a struggle you've had. Your story is the kind of thing I thought I'd only hear about in medical ethnographies :ph34r: But I'm so glad you finally have confirmation of lyme disease! Not that anyone wants to have lyme disease, but at least it's an answer and a vindication! And I'm sure it will be a big help in guiding your future decision making.

Anyhow, thanks so much for your words of strength. It means so much to have some affirmation. Luckily for me, my family is totally supportive, and they trust my instincts too....(after my aunt was told to seek therapy for five years when she felt a breast tumor and they didn't believe her, only to be told she had six months to live after they finally decided to take her seriously and give her a mammogram, her with a three year old and a one year old at home--thank God, 15 years later, she's still proving them wrong--there's not a lot of faith in the "omniscient" doctor in my household). But still, it means so much to have this board, so I can learn from everyone's hard-won battles, so hopefully I can avoid some of that suffering myself.... so {hugs}.

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NoGluGirl Contributor
Noglugirl-

That's such a painful story to hear. I have some questions about your gallbladder problems, though. I have attacks of pains under my right ribcage; it feels like somebody is stabbing me in the ribs. They'll last for about 20 minutes, and then subside to a dull ache. The only way to cope is to curl up into a ball on the floor and not move and barely breathe until it passes. I had an especially bad one the other day and wound up in the ER at Cedars Sinai. I was visiting LA and had to be on a plane all day the next day--I was terrified of getting on a plane and then finding out I had appendicitis or something.

In the ER, I gave them my full history, but all they did for me was to run the same exact tests I'd already told them I'd had done. Just blood work, that's all they did. Then said, "Well, your white count is fine, so you're in no danger; just maybe don't eat anything tomorrow while you travel?"

$1000 I paid for that stellar advice. There ought to be a satisfaction guarantee for things like that.

Anyhow, I just had another attack under my ribs tonight, for a half an hour. But as far as I know, none of my doctors have tested anything to do with the gallbladder. I mentioned it to one of the Drs once, because my dad had an emergency gallbladder removal a few years ago, and the pains I'm having sound just like his. Also, I believe it's something that runs in families. She gave me a referral for an ultrasound, but at the time I still thought it was something infectious b/c I'd just gotten back from three months in rural Africa. When I finally wanted to use it, I found out my referrals didn't extend from one school year to another, and my new doc...well, she's the one who told me to go to the psychiatrist.

So my question, I guess, is what sorts of tests should I request for gallbladder? A CT? I've been curious as to why they've requested no CTs for me before; I think my GI doc is enthralled with scoping. That's all he keeps saying, is wait for the scope...never mind he made me wait two months just for scheduling the darn thing!

That said, I'm really glad that you have finally found the road to healing, and have found someone who can help you that (she doesn't happen to practice in Atlanta, does she? Wishful thinking...)

If it does turn out to be my gallbladder, the upshot of all this waiting is that I've discovered a gluten intolerance through enterlab, so it may be a blessing in disguise. Perhaps I wouldn't have caught it until much later, if I'd chalked all my symptoms up to gallbladder.

Rachel--

Thanks so much for your words of support! I can hardly believe what a struggle you've had. Your story is the kind of thing I thought I'd only hear about in medical ethnographies :ph34r: But I'm so glad you finally have confirmation of lyme disease! Not that anyone wants to have lyme disease, but at least it's an answer and a vindication! And I'm sure it will be a big help in guiding your future decision making.

Anyhow, thanks so much for your words of strength. It means so much to have some affirmation. Luckily for me, my family is totally supportive, and they trust my instincts too....(after my aunt was told to seek therapy for five years when she felt a breast tumor and they didn't believe her, only to be told she had six months to live after they finally decided to take her seriously and give her a mammogram, her with a three year old and a one year old at home--thank God, 15 years later, she's still proving them wrong--there's not a lot of faith in the "omniscient" doctor in my household). But still, it means so much to have this board, so I can learn from everyone's hard-won battles, so hopefully I can avoid some of that suffering myself.... so {hugs}.

Dear JenKuz,

If you have ever had gas to the point you feel like you are having a heart attack, and feel like you are going to be sick all the time (especially after eating high fat foods or anything spicy) the gallbladder is very likely. That pain on your right side below your rib cage definately indicates it. And guess what? That poor little organ is only an innocent bystander. It turns out, gluten intolerance can cause your gallbladder to go bad! That explains why mine went bad when I was so young. You are right, it does run in families. My cousin, me, and my grandfather have all had ours removed and got terribly ill. Chronic gallbladder disease is not that common, usually people have a sudden attack and are taken to the hospital and had it removed right after. Do not depend on ER docs to diagnose it correctly. While in the surgeon's office waiting to schedule my operation, I prayed for a sign that I made the right decision. Just then, a woman not much older than me came in, telling me I was smart getting it out now. She had been misdiagnosed 15 times in two months by ER docs at our local hospital. Due to her tests like mine, not showing anything, they labeled her crazy and said her gallbladder was fine. They were wrong. She had a sandy substance made of fat called sludge in her gallbladder, which ate through the gallbladder wall into her pancreas. It resulted in pancreatitis, liver, and kidney problems. The woman had a feeding tube in her belly button, can never for any reason consume alcohol, and has to stay under a certain amount of fat per day. Those tests are only about 33 percent accurate at best, but in some cases they help diagnose the trouble. You can have an abdominal CT where you drink barium and they take pics, though they are known to be the least accurate. However, in the event you have a low density stone, it is the better test. Apparently, that is what I had, which marred the inside of my gallbladder, causing it to become inflamed and irritated. There is also an exam where they do a gallbladder ultrasound. The HIDA scan is also a major diagnosic tool for this condition. I hope that helped. If you have anymore questions, I would be happy to indulge you.

Sincerely,

NoGluGirl B)

P.S. If you have tried PPIs like Prevacid and Prilosec and they do not work so well after a while, or they do not help at all, that indicates a gallbladder problem too.

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JenKuz Explorer
Dear JenKuz,

If you have ever had gas to the point you feel like you are having a heart attack, and feel like you are going to be sick all the time (especially after eating high fat foods or anything spicy) the gallbladder is very likely. That pain on your right side below your rib cage definately indicates it. And guess what? That poor little organ is only an innocent bystander. It turns out, gluten intolerance can cause your gallbladder to go bad! That explains why mine went bad when I was so young. You are right, it does run in families. My cousin, me, and my grandfather have all had ours removed and got terribly ill. Chronic gallbladder disease is not that common, usually people have a sudden attack and are taken to the hospital and had it removed right after. Do not depend on ER docs to diagnose it correctly. While in the surgeon's office waiting to schedule my operation, I prayed for a sign that I made the right decision. Just then, a woman not much older than me came in, telling me I was smart getting it out now. She had been misdiagnosed 15 times in two months by ER docs at our local hospital. Due to her tests like mine, not showing anything, they labeled her crazy and said her gallbladder was fine. They were wrong. She had a sandy substance made of fat called sludge in her gallbladder, which ate through the gallbladder wall into her pancreas. It resulted in pancreatitis, liver, and kidney problems. The woman had a feeding tube in her belly button, can never for any reason consume alcohol, and has to stay under a certain amount of fat per day. Those tests are only about 33 percent accurate at best, but in some cases they help diagnose the trouble. You can have an abdominal CT where you drink barium and they take pics, though they are known to be the least accurate. However, in the event you have a low density stone, it is the better test. Apparently, that is what I had, which marred the inside of my gallbladder, causing it to become inflamed and irritated. There is also an exam where they do a gallbladder ultrasound. The HIDA scan is also a major diagnosic tool for this condition. I hope that helped. If you have anymore questions, I would be happy to indulge you.

Sincerely,

NoGluGirl B)

P.S. If you have tried PPIs like Prevacid and Prilosec and they do not work so well after a while, or they do not help at all, that indicates a gallbladder problem too.

Wow. That sounds EXACTLY like me. So that's related to gluten, too, huh? My dad had his out, and my mom will probably have hers out, too...she thought she had a problem with it, but they found a large mucous filled cyst the size of a turkey leg in her intestine. They decided that was causing her problems. So they didn't take her gallbladder. That was a couple months ago, but she's had two attacks since then.

I once had heartburn so bad I thought I was collapsing a lung, and I also had gas so bad, or else a muscle spasm, that I went to the ER thinking something had ruptured. The only tests they've done for gallbladder is the abdominal ultrasound, but they were focusing on the liver, thinking maybe I had a parasite of some kind.

And, yes, I tried the prevacid for a month, and found it did nothing.

I have been wondering about this, also, because I have SUCH bad malabsorption. The Enterolab test for it was extremely high. But also, the food I eat comes out in basically recognizable shape half the time. So I was thinking, that had to be a pancreas problem, because intestinal damage would prevent small bits form being absorbed, but it should be somewhat broken down by the time it gets there. A gallstone in the bile duct could prevent the bile from getting into the intestines, I would think...maybe that's my answer.

I have an upper endoscopy tomorrow. I'll ask me GI doc about gallbladder, and in the meantime I'll research these tests, so I know which to insist on :)

In the meantime, Ugh, I can't sleep, super nauseous, and worst of all I can't drink any water :( Bleah.

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NoGluGirl Contributor
Wow. That sounds EXACTLY like me. So that's related to gluten, too, huh? My dad had his out, and my mom will probably have hers out, too...she thought she had a problem with it, but they found a large mucous filled cyst the size of a turkey leg in her intestine. They decided that was causing her problems. So they didn't take her gallbladder. That was a couple months ago, but she's had two attacks since then.

I once had heartburn so bad I thought I was collapsing a lung, and I also had gas so bad, or else a muscle spasm, that I went to the ER thinking something had ruptured. The only tests they've done for gallbladder is the abdominal ultrasound, but they were focusing on the liver, thinking maybe I had a parasite of some kind.

And, yes, I tried the prevacid for a month, and found it did nothing.

I have been wondering about this, also, because I have SUCH bad malabsorption. The Enterolab test for it was extremely high. But also, the food I eat comes out in basically recognizable shape half the time. So I was thinking, that had to be a pancreas problem, because intestinal damage would prevent small bits form being absorbed, but it should be somewhat broken down by the time it gets there. A gallstone in the bile duct could prevent the bile from getting into the intestines, I would think...maybe that's my answer.

I have an upper endoscopy tomorrow. I'll ask me GI doc about gallbladder, and in the meantime I'll research these tests, so I know which to insist on :)

In the meantime, Ugh, I can't sleep, super nauseous, and worst of all I can't drink any water :( Bleah.

Dear JenKuz,

Wow, your poor Mom! A mucuous filled cyst the size of a turkey leg in her intestine? Ouch! A stone in your bile duct would be best detected using the HIDA scan, where they inject you with a hormone that makes your gallbladder secrete bile. My dad had a coworker whose son was experiencing severe stomach problems and was only 12, and he had been having difficulty for a year. We helped him. Nicky loved ice cream but had to stop eating it because it made him so sick. Then there were times he would be sick even though he was not stressed out. His father was really worried. Dad asked him such questions, and suggested it was his gallbladder after telling him what happened to me and about the research I had done. They did a HIDA scan and in middle of it, he became overcome with excruciating pain. It turns out, his gallbladder was filling up with bile, but could not empty it. This is indicative of a gallstone lodged in the bile duct. Nicky had his gallbladder removed, and right after the operation, his dad said he started growing again and could eat ice cream and anything else he wanted without trouble! It was such good news! Though a lot of doctors say that you probably do not have one if you are not jaundiced, but that is not true in some people's cases. I used to get colon attacks that were so painful, I would actually shreik from the pain. It felt like someone had taken a double-edged sword and ripped it through my gut! That was on top of the severe nausea and reflux. A couple of other things I forgot to tell you before is another way you can tell it is a gallbladder situation, for some reason ginger root aggrivates it instead of helps it. Usually ginger gets rid of indigestion, but it always aggrivated mine. They said that on a website I looked at later, too. Another thing is gallbladder disease tends to act up more at night. I had a terrible time sleeping too. I was always too nauseated to sleep. It also always seems worse on an empty stomach. I sure hope your endoscopy went well. :) Let me know what your GI doc said.

Sincerely,

NoGluGirl

P.S. If you had appendicitis, the pain would be a lot lower. Your appendix is attached to the end of your colon. It will send excruciating pain across your lower abdomen (though I had similar symptoms with my gallbladder disease with my colon) as I mentioned prior to my cholecystectomy.

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